Our Families Journey Caring for a Mom with FTLD-MND

It is important to know as you read this journal that this was Cathy's life post diagnosis...

To know Cathy Truly you must know that she was: a Wife, Mother of 3 boys, Grandmother of 9, Sister, Niece, Aunt, Daughter, and Friend.

Our families journey began with Cathy's diagnosis the week of Thanksgiving 2006, Cathy was 52. Her original diagnosis was Pick's Disease/FTD. Looking back her symptoms most likely began 3-5 years before diagnosis. Most of the Doctors have told us that from onset of symptoms to death... the average timeframe is 4-7 years. (sigh) In the end her brain autopsy showed Frontotemporal Lobar Degeneration with Motor Neuron Disease FTLD-MND. (Basically... Frontal Lobe Dementia with Lou Gehrig's Disease)

Friday, February 1, 2008

Home

Tonight I heard a sound & looked down the hallway... I was expecting to see Cathy peak out of her bedroom, wave & smile, & then close her door... & then I remembered she isn't here.

We came home from Wisconsin today without Cath. We both know that it is for the best... she is in a safe place... but it was hard to say Good Bye. She has been such a big part of our lives... especially over the past 9 months. It made it easier leaving her knowing that she is adjusting well to her new 'home'. Monday... was Terrible. But Tuesday through today she seems to be comfortable there. She knows exactly where things are already... she gets her own coffee (lots of it!), empties her own trash, hugs & kisses the staff, sneaks cookies out of the kitchen in the special care unit she is in, pats the shoulders of the other residents as she walks by & smiles, and she even made a necklace during activity time!

Yesterday she was moved into a private room & Lori (one of the social workers) laughed when she told us the story. They showed Cathy the room they would be moving her to later that day... & before they were even ready to move her Cathy had her stuff packed up and was pushing the cart to her new room... she is fast & sneaky! :) She seems happy & content in her new room. She keeps the door shut but is constantly opening it, waving at people, & then closing it again. She is so happy to have her 'new' TV also... watching DVD's has become a habit again. (we are getting her headphones per the administrators request... to keep the noise level low in the special care unit... but luckily they will let her keep her TV, she would have been so restless without it) While we visit she is constantly on the move... just like home. But I can tell that some things are good for her: having the same routine everyday (which we didn't have at home with the kids schedules), a quiet atmosphere (note kids again), being in a place that she isn't constantly being told 'no' because she is doing something unsafe, & having her own space.

She is still mad at Gayle... we had thought about trying to bring him in with us... but yesterday they extended her 'respite' stay, due to her behavior on Monday the administrator is still nervous that she will lash out at someone (??note that she has been happy since Monday, & who wouldn't be pissed off... 53 and moving into a nursing home when you don't think you are sick! But... we do realize they have to protect the residents that are already there), so it is still not permanent, but the staff seems to be comfortable with her & the social workers are both hopeful. We will have to keep Gayle away a bit longer... hopefully her anger will pass in time as she progresses with the illness... Today she thought she saw him drive by past her window & she started shaking her fist & saying, "Gayle, On Fire!" again... but she settled down easily and her anger is only focused at him.

We took Misty, her dog, in to see her on Wednesday. Poor Misty was so nervous, her hind legs were shaking when we went in. It was a long walk down the 3 halls to see Cathy & the residents we met on the way Loved petting Misty. Once we got to the room Cathy smothered her with kisses. But then she seemed to forget about her & sink back into her DVD. At times she would remember Misty was with us & love her up a bit... but then forget about her again. We joke about Misty needing doggy therapy... but we really do think she senses what is going on. That night she snuck into our room & slept on my feet!

Jean got into town yesterday & stopped in to see her right away. She also stopped by this morning when we were saying our Good Byes to her. (Thanks John for letting her fly North to visit... too bad she couldn't have brought some warmer weather with her!) "Friends Forever!" ~is what they used to say to each other

It makes it hard leaving knowing that Gayle can't stop to visit her. Luckily we know she has good friends in town who will visit her... friends like Jean, Barb S. & Barb H. And we found out this past week that her youngest son Ryan is moving up to Wisconsin a week from today with his family. It will be hard for us not to see her everyday... but it is comforting knowing that she is Loved & will not be alone. And just getting to know the staff this week helped also... they are good with her & so caring. Thank You to everyone who has helped out this past week!!!

We celebrated Brad's Birthday with her on Thursday... we took in cake & ice cream. I picked up a card for her to give him... she signed it "Cathy Handly" instead of "Mom". It was a rough day for Brad. But it probably would have been harder if we would have been home & he wouldn't have been able to see her. At least we were able to be with her.

So... today we came home. We missed our kiddos like crazy! They were glad to have us home. They want to go see Grandma & had lots of questions. Chase asked, "Is Grandma happy?" and "Does Grandma have friends there?" And Mia said, "What are their names?"

I will still try to keep the blog up to date with things. But since we won't be with her everyday it will be less frequent.

When people ask, "What can we do to help?" Our answer is this: If you are far away please send her a card... just a card signed with your name, maybe put some pictures inside... she loves pictures! (You can mail them to Gayle & he will take mail in to the front desk to be delivered to her) If you are near, please stop & visit, a short 10 minute visit means as much as a long visit. (Actually the longer you stay the more restless she seems to get) She Loves Diet Coke, sweets, & hugs! ~ No flowers please... they are afraid some of the other residents may eat them or the dirt they are in...

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